In a world obsessed with trendy restaurants, cook-outs and food photos posted to social media, imagine if all you could eat were a handful of fruits, vegetables and powder formula.
That’s how Jori Kodroff, 24, has lived since she was diagnosed with eosinophilic disease as a child. The digestive disorder has no known cure and symptoms may include pain, difficulty swallowing, loss of appetite and nausea.
“For ten years, I was eating pretty much the exact same dinner every single night,” Kodroff said.
The amino acid-based formula that Kodroff consumes twice a day is required to be covered by insurance providers in Illinois. In fact, Kodroff’s mother, Ellyn, testified in front of state lawmakers nearly a decade ago before the law was officially passed. The coverage is potentially helping thousands of people living with eosinophilic disease, as doctors who treat it say new cases have dramatically increased in recent years.
“Often they have multiple food triggers. It’s not just the milk. It’s not just the wheat. It’s not just the soy. It’s often many, many foods,” said Dr. Ikuo Hirano of Northwestern Memorial Hospital
But after switching insurance providers nearly two years ago, Ellyn Kodroff said the family’s formula claims have been repeatedly denied. Jori remains on her parents’ insurance plan and Ellyn said the family has spent thousands of dollars on the formula when the majority of the costs should have been covered.
“To have to re-fight something that we fought ten years ago and won, it’s very frustrating,” Ellyn Kodroff said.
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The family said it has been purchasing Jori’s formula directly through a manufacturer while trying to resolve the coverage issue with UnitedHealthcare.
“It’s just very frustrating to have to explain to somebody over and over the same story and they really don’t care,” Ellyn Kodroff said.
NBC 5 Responds contacted UnitedHealthcare regarding the Kodroffs’ concerns. The family received a letter from the insurance company stating their request for prior authorization was previously denied in error for the out of network providers.
A spokesperson later responded to NBC 5 Responds by saying the company had reviewed and correctly paid the claims in question by Ellyn.
“We’ve also provided her with additional benefits information to help ensure future claims continue to be processed correctly. We regret any inconvenience this has caused Ms. Kodroff,” wrote the spokesperson.
Ellyn said the coverage will now save the family hundreds of dollars each month. And the family is optimistic Jori will soon be able to enjoy more foods. She is part of a clinical trial and she is hoping it will result in a an expanded diet and less symptoms.
“Since I joined the trial, there’s been a lot of good change and I’ve been able to almost double my diet, which was very slim,” Kodroff said.
According to CURED, a foundation headed by Ellyn that raises awareness for eosinophilic disease, 1 out of 1,000 people are living with the disease.
Hirano said many of the new patients are being treated for eosinophilic esophagitis, in which they are having extreme difficulty swallowing food. Triggers can include milk and wheat. But Hirano said patients can still live a very active, normal life through “elimination diets” and amino acid-based formula.
“Often they’re able to only manage only a handful of foods, maybe under a dozen foods that don’t trigger a response,” Hirano said. “That’s where this type of formula diet comes in very handy.”
